“You have multiple myeloma.”

That phrase, delivered by physicians at the University of Arkansas for Medical Science’s (UAMS) in November of 2008, was the first official, irrefutable diagnosis of my cancer career. We suspected that I had myeloma, but there it was. They said it out loud, and it still reverberates in my mind.

While I would have much rather heard, “Tests show that there is a pea underneath your mattress that has been causing your back pain,” I knew that I wasn’t immersed in some grim fairy tale. What was happening was all too real.

After my diagnosis, I undertook a crash-course study of multiple myeloma. I understood, in very basic terms, that it was a cancer of the blood and bone marrow environment and that the diagnosis was not accompanied by the words “Congratulations, Sean!” This was bad news.

How exactly does one find out definitively that you have multiple myeloma? Well, a patient needs to navigate through an obstacle course of medical tests, and then minds, far more brilliant than mine, gather the data, interpret the images, evaluate the numbers, stain the blood cells, and perform countless other tasks to determine whether folks like you or me have myeloma.

By now, I’ve been through lots of tests. After some initial x-rays, a CT scan, and an MRI in my small town in Missouri, my local doctor sent me to UAMS to go through a more comprehensive medical workup by people who eat, breathe, sleep, and, more importantly, treat multiple myeloma every day. They know what they are doing. Besides, my insurance is in network at UAMS and not at two other institutions I investigated!

Just hours before traveling south for all of these tests, an old acquaintance whom I hadn’t seen in nearly twenty years, called me to say that he had been diagnosed with multiple myeloma a few years before. He’d traveled from Virginia to Arkansas for treatment and was doing very well. My friend didn’t pull any punches. He said that the course of treatment was tough, that there would be rough days ahead, but that I could get through it a day at a time. He said that my faith and good humor would serve me well. His encouragement bolstered my resolve to get on with things.

Before beginning the procedures in Little Rock, I needed to give them my Informed Consent, whereby I agreed that I had received enough information to understand what the procedures were, what risks and benefits were associated with the tests, what alternatives might exist, and what the potential financial considerations and costs would be. And forget the treatment; that was just for the tests!

I gave consent to proceed, but did I understand every nuance of every procedure and the methodology of every test? Nope. At this point, I was overwhelmed by pain and the potential of having a far advanced, life threatening illness. Myeloma information is confusing. I researched what I could and proceeded with the hope that I was surrounding myself with good people.

In very simple terms, the tests and procedures that I went through during my evaluation included:

• Complete Blood Profile tests quantified white blood cells, red blood cells, platelets, and other key components of my blood. Findings would help determine the quality of my bone marrow and the state of my kidney and liver function. Doctors also measured my miscellaneous blood chemistries, coagulation tests, and performed other analyses.
• Protein Electrophoresis was used to measure the amount of monoclonal (M) protein in my serum and my urine. An abnormal amount of M-protein in blood and urine samples would signify the presence and extent of myeloma.
• Bone Marrow Aspiration (BMA) and Bone Marrow Biopsy (BMP) were procedures done to estimate the number of myeloma cells active in my bone marrow and to determine the damage myeloma cells may have created in the marrow. My first BMP and BMA were done on the back of my left hipbone. Specialized needles went through the bone and into the marrow cavity and withdrew specimens of marrow and pieces of the bone. Of the dozen aspirations and biopsies I have had done since the first one, most were only mildly uncomfortable and healed quickly. The first one hurt like fire because my bone fractures were not yet appropriately medicated.
• Complete Skeletal Bone Survey evaluated any significant bone damage and the scope of bone disease caused by the myeloma. Non-invasive, low-dose x-rays of my hands, arms, legs, feet, ribs, back, pelvis, and skull captured the images needed.
• Magnetic Resonance Imaging (MRI) utilized a magnetic field and radio waves to create a computerized scan of my bone and bone marrow. More effective than x-rays in determining the exact location and approximate volume of myeloma cells, a series of MRI images through treatment periods can indicate progression of myeloma. MRI is a safe, non-invasive procedure. Sometimes a contrasting dye is injected into the patient’s vein. My first MRI took nearly 2 ½ hours, and while the procedure itself was painless, because of bone fractures, it was difficult to lie flat on my back on the table which slides into the MRI tube. As my bones have healed, the procedure has become much easier. Relaxation techniques and keeping my eyes closed help!
• Positron Emission Tomography (PET) Scan was done to show the presence of active cancer, whether my tumors were malignant or benign, and to identify other abnormalities that other conventional methods are unable to discover. PET scans can also detect multiple myeloma outside of the bone marrow and have proven to be a superior test for monitoring recurrence of myeloma. I fasted for several hours before the PET scan and was given a radioactive dye intravenously and a drink with tracer elements one hour prior to the test. This test, like the MRI, is a ‘table’ procedure and was only painful because of my numerous fractures.
• Cytogenetics Testing makes use of the obtained bone marrow samples to identify any chromosomal abnormalities in the myeloma cells. Doctors also use these Gene Array findings to make important treatment protocol decisions.
• Bone Densitometry was performed to establish bone strength, the amount of bone loss, and to provide baseline information for future comparisons. It was a painless, non-invasive test during which I laid down on my back with my feet propped up. A low radiation dose was used to scan my forearm, spine, and hips.
• Echocardiogram (ECHO) using sound waves captured a moving digital image of my beating heart. Doctors noted the heart’s functionality, structure, thickness, size, and motion patterns to determine heart health and prior disease.
• Electrocardiogram (EKG) graphically recorded my heart’s electrical activity and provided data about the heart rate and rhythm as well as the presence of past or current heart attacks.
• Pulmonary Function Testing was done to measure lung capacity and effectiveness and the quality of lung function. Spirometry measured breathing capacity and flow rates. Lung Volume Tests measured the total amount of air in the lungs and capacity volumes of the lung’s compartments.

After the test results came in, the consensus opinion in Arkansas was not wishy-washy.

“You have IgG kappa multiple myeloma, Stage III. Your bone marrow aspiration count shows that you have 77.5 percent plasma cells, your IgG measures at 5300 mg/dL, and your serum M component is at 4.5 g/ dL. You are anemic and have extensive bone disease. We recommend that you seek help immediately, and if you would like to be treated here, we would be glad to work with you.”

“Yeah, but how’s my cholesterol?”

I continued my quick research and discovered that there were different schools of thought regarding treatment for multiple myeloma. The Arkansas Total Therapy approach was overtly more aggressive than other protocols. I called other institutions, scoured Internet sites like the International Myeloma Foundation ^[1], talked to local doctors, and searched for myeloma patients wherever I could find them – all in the span of a week.

And I made up my mind. I decided to take a journey to Arkansas. I survived the tests, bring on the treatment! Next time I’ll write about the Total Therapy treatment protocol that I pursued.

I want to encourage you new folks out in “Myelomaville” to not be afraid of the diagnostic procedures. If you have questions, ask your doctors. Visit sites like the Myeloma Beacon’s Forums ^[2]. All in all, the tests are no big deal. If I could get through this step, I know that you can! Stay well!

Sean Murray